Rare Diseases Europe is a unique, non-profit alliance of 761 rare disease patient organisations from 68 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe.
FRENCH ASSOCIATION AGAINST MYOPATHIES
VAINCRE LES MALADIES LYSOSOMALES
ASSOCIATION ENFANCE ET MALADIES ORPHELINES
The aim of the AEMO is to inform and sensitize a large public about the problem of rare or orphan diseases as well as to raise funds to support any approach or action related to the field of rare or orphan diseases.
The French-speaking information portal on rare diseases informs and guides patients, their relatives and professionals to specialized consultations in French-speaking Switzerland and to useful resources.
Patients with lysosomal diseases are at the center of our activities. The main goal is to improve their quality of life.
ProRaris represents and defends the interests of patients with rare diseases and their associations.
The purpose of this portal is to help improve the diagnosis, management and treatment of patients.
It is a self-help organization for parents with a child affected by mucopolysaccharidosis.
Johna's just begin
National MPS Society
Team Sanfilippo Foundation
The Sanfilippo Children' Research Foundation